Nurses in St. Louis Create New Standard of Care for Families After Infant Loss

Families in St. Louis who lose a baby are receiving structured support from a local nonprofit that seeks to fill a gap in medical care.

The Butterfly Kisses Alliance was founded in 2023 by four labor and delivery nurses at Progress West Hospital. The group aims to provide resources for families impacted by the death of a baby, whether that loss occurs before birth, during delivery, or shortly after.

Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey established the organization after observing the emotional toll of their work. Hollingshead said the nurses grieve with the families because they are present during the worst day of a parent's life.

Hollingshead noted that while most medical diagnoses have a defined standard of care, there was no established protocol for unexpected infant loss. The group created a new standard for the hospital that dictates how staff communicate with families, from office personnel to ultrasound technicians.

The alliance also creates comfort kits containing books, cards, and self-care items. These kits are mailed to families around the world who are coping with pregnancy loss.

Kelsey and Greg Fussner experienced the loss of their daughter Nora in 2023. After a miscarriage in 2021, Kelsey became pregnant in July 2022. Her doctor initially expected a delivery by 38 weeks but later scheduled a C-section for 39 weeks and one day.

At her final appointment at 38 weeks and three days, an ultrasound revealed no heartbeat. Kelsey waited eight hours for surgery to deliver Nora. The nursing staff, who were the founders of the alliance, removed baby items from her room and closed doors to other patients to offer privacy.

After leaving the hospital without their daughter, the nurses gave the family a weighted stuffed elephant. The toy was stuffed to match Nora's exact weight of eight pounds and 13 ounces. They also packed a comfort kit with memories of Nora, including her hospital blanket, footprints, a necklace, a homemade quilt, and photographs in the outfit she was meant to wear for discharge.

Kelsey received another surprise a few months after Nora's passing. She was pregnant again. Under the care of a different doctor, she was scheduled for a C-section at 37 weeks. That date fell on April 10, the same month and day Nora was due to be born.

Kelsey chose to keep the original date. She gave birth to Abigail on April 10, 2024. The alliance continues to offer online resources for mothers, fathers, siblings, and grandparents. These materials provide advice on physical changes after loss and ways to honor the child.